Well! A bit of an update to my previous thread "Feeling Confliced about Getting an ASD Assessment"

We had the first appointment with a Developmental Paediatritian who has a specific interest in Autism (he has a son with Autism), on Thursday.

At first he was so understanding, and nice, but shortly after a starting discussing my concerned he started looking bored and annoyed. After a little while, he just got up (while I was talking), and went and sat by DS. Anyway. Basically he did a few thing little things with him, and told me (rather sternly), that there is no way DS is anywhere near the spectrum. That he's just very anxious, and has some sensory issues. He referred us only to the Psych (no speechy to complete the assessment, and no OT for the sensory stuff). He told me there is no way DS could be on the spectrum because he pointed to show him something. Because he put generic trains with Thomas trains. And because he was making car noises while moving the trains around (he said "My son has Autism and couldn't make car noises until he way 10" And that children on the spectrum don't just learn these things, there have to go through intensive treatment to learn anything like that)

I'm so confused. He thought nothing of the fact that there is no creativity in DS's play. He just moves the trains. He doesn't follow storyline in books/movies. He ignored my experience with DS regarding his social anxiety.

On one hand I feel as though I should be really happy. The professional says he's not on the spectrum, that we just have anxiety and sensory to address. But on the other hand, I just feel like he's wrong. It just doesn't fit. I know DS has a lot of anxiety, and sensory issues, but I'm so sure that's not all it is. It just doesn't makes sense.

Maybe I just don't know enough about anxiety?
And why would DS has always been so anxious? Even as tiny baby. We have always coslept, carried him constantly, breastfed, he's never been apart from his parents. I have always done everything imaginable to help him feel secure, so what is causing this anxiety? But it makes sense to me, that if he struggles to understand facial expression (crying when people smile at him), understand social cues, that if his brain just works a little different, if he is on the spectrum, that his anxiety comes from this.

Sigh. I feel so confused and frustrated. I feel as though telling us it's anxiety is telling me that everyone but me was right. That it is that I just don't give him what he needs.

I'm very sorry that you had a rough visit and left without feeling either heard or understood.

Although anxiety can be caused by inappropriate parenting, in know in my DDs case, that isn't the cause. It comes from inside her. I have questioned so many times if I've doing the right things for her because sometimes the way she is seems like the product of poor parenting. I've spent time in therapy dealing with this because it has been so rough for me.

Have you read "Quirky Kids"? It's the book I've found the most helpful. It talks about kids who kind of on the edge -- different, but not with classical autism. Kids who are just... quirky.

I'm so confused. He thought nothing of the fact that there is no creativity in DS's play. He just moves the trains. He doesn't follow storyline in books/movies. He ignored my experience with DS regarding his social anxiety.

Sigh. I feel so confused and frustrated. I feel as though telling us it's anxiety is telling me that everyone but me was right. That it is that I just don't give him what he needs.

Did you know that doctors used to tell mothers that they caused Autism "refrigerator mothers"? Sometimes the "expert" is a dud--I say this not because he didn't tell you what you expected to hear, but due to his manner, he obvious bias that "classic Autism" is the only Autism, the quality of his "assessment", and essentially blaming you for his problems. The "expert" didn't really tell you anything.

Ds' psych pretty much shrugged at the mention of Asperger's but ds had a 3hr evaluation at a hospital clinic by a team that included a developmental-behavioral ped, a speech language pathologist, a psychologist, and a social worker; the results appointment was about 2hrs on a separate day. The Dr. felt he was on the borderline for Asperger's due to his age and the SPD and ADHD complicating matters, but what put him most on the spectrum side was his difficulty with social reciprocity and pragmatics. Keep going until you are satisfied that your concerns are addressed.

"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."

I'd go for a second opinion - the ped. might be right, but if he hasn't addressed your concerns and let you know why they aren't part of a diagnoses, and how they are a part of something else he hasn't done his job well. You do have something to go on with the sensory stuff, tho, at least. And don't forget - just because it's not obvious (ie, measurable) to professionals doesn't mean you aren't on the right track! There are lots of kids who get ruled out for stuff when they're little, but ruled in when they're older because the tests and criteria aren't sensitive enough to rule out normal childhood stuff. Emmiline is right, keep going until you hear answers to your questions.

I understand the frustration & confusion. I have a 3yo DS with severe anxiety, sensory issues, and social issues. We go on playdates and he sits in my lap for 3 hours straight or plays in a separate room all by himself (and only with me nearby). I could tell something was 'off' when he was only a day old. I have so many concerns with the way he plays (or... doesn't) and his obsessions, echolalia, etc. Anyway, he was in EI for about 6mos before he turned 3... and he has also been seen by his pedi and a neurologist, and I haven't felt like my concerns were fully 'heard' or understood. He has never had a developmental eval but I have a feeling if he did, we'd get very similar results to what you've gotten. All I can say is, trust your gut, get a second opinion, etc. I do think my DS may eventually be diagnosed with Aspergers or something... but I've also come to a bit of peace that right now I'm able to do a lot to meet his needs even without a diagnosis. I guess that's the key... what would you change if you had a diagnosis? Does he need speech therapy, or OT, etc.? You can pursue each of those things even without a diagnosis. Just something to think about if you don't want to or can't get a second opinion.

DH & I seem to both be on the high-functioning end of Asperger's -- neither of us has been diagnosed but we each have almost every symptom, though it plays out in different ways for each of us. So I'm not really surprised that DS has a lot of similar issues and I just want to do whatever I can to help him NOW, even if no one understands what's going on with him (probably because I can't explain it right!!!) I also understand that worry of where did the anxiety come from... like I said, DS was born anxious, and we still nurse, co-sleep, etc. I've never been away from him for more than a few hours (during which I've left him with DH) so I know in my heart I haven't done anything to 'cause' this but it's hard to not feel guilty somehow anyway. Is there any history of anxiety in your family? Anxiety issues run in my family... that helps me realize some of it is just genetic.

Sorry to ramble & sorry you had a rough appointment. It sort of sounds like the doc had a preconceived notion of how ASDs always look and failed to pick up on the fact that two kids with ASDs can have totally opposite issues, strengths, and weaknesses.

What a terrible doctor. It certainly sounds like your DS has skills that suggest there might be something else going on but the doctor's lack of attention to your concerns or kindness toward your uncertainty means he is not the right person to help you! Most importantly, please do NOT take any of what he said to mean you don't do enough for your DS!!!!!

I feel some of your response is because you feel like "something is wrong" but this doctor basically told you no. However, even if your son isn't on the spectrum, there could be something going on with him. I know you don't hope there is something "wrong" but I know when our son was finally diagnosed I felt relief because I knew something was happening and wondered for a long time if I was just a terrible mother. Our DS is not on the spectrum but he does have sensory issues and a severe language disorder. He was and still often is very hard to parent and it was such a relief to know that its not me. I was exhausted, had a hard time taking him anywhere, and felt out of control. Now I have the tools to help him and me more effectively. I would HIGHLY recommend getting a second opinion from a doctor who does not just specialize in spectrum disorders. A good developmental pediatrician is the only reason I think I am mostly sane today :)

It can be so confusing. But you are the mom and if you see it, then its probably there. As others have pointed out Autism looks so much like other things but it is important to get a proper diagnosis since this will determine services. I know parents who were told their children is not on the spectrum but later on were diagnosed as such. I am also learning that certain social/ cultural groups have a harder time getting an Autism diagnosis. Particularly if your LO has borderline symptoms it could be difficult. I agree if in doubt seek a second opinion.